The draconian world of TB

The world of TB is a very intimidating and indeed a draconian one – and it’s not solely because it is a killer disease. Consider the reasons why:

The world of TB and the world of a child who is not doing well in school are much the same. When the child does well, the credit is shared by the entire family and school community that the child was connected with; when a TB patient goes on to complete treatment and gets well, the credit is for everyone to share.

When a child gets poor grades or a TB patient does not complete treatment and fails to get well, the onus shifts – the child is a non-performer, a laggard, an under-achiever etc. A TB patient is a defaulter, a drop-out & a living, walking, breathing nuisance to society waiting to breathe out the malicious bacilli into the lives of all those who came in contact with him/her.

The truth in fact is far from what people believe. A child performs badly not because s/he does not want to do well; the child under-performs because the system failed her/him in some way. A TB patient did not complete treatment and remained sick, or worse still died, not because s/he did not want to get well and was on a suicide mission – the patient did not get well because the system failed her/him in some way.

The TB sector in India (and probably in other parts of the world too) is oxymoronic in nature. We have the money; we have the expertise; we have the drugs; we have the infrastructure – and yet, we have TB figures on the rise and alarmingly so. We also have alphabets being added to it in profusion – DR, MDR, XDR and probably TDR. Why is this situation so? Is every TB patient on a suicide mission? Is there an insidious hand at work to kill the world with unchecked bacilli?

Let’s redefine the defaulter

What or who is a defaulter? The dictionary defines a defaulter as someone who ‘fails to fulfill a duty, obligation, or undertaking’. This definition begs a question. When a TB patient seeks treatment and has entrusted her/himself to a medical system, who gave the undertaking? What was the undertaking given for? The answer is obvious. The health system gave the patient a sacred undertaking and took on the duty of making her/him well. And then failed. So who is the defaulter? The patient or the system? It doesn’t take much intelligence to arrive at a logical answer. Undoubtedly, it is the system which has defaulted. It is the system which is the defaulter. If this be true then let’s shift the argument a bit.

When the system defaults

Does a bank ask a defaulter why s/he defaulted on a loan? It is understood that a person who borrowed money in trust will keep her/his obligation to pay it back. Then why must the patient be sympathetic of the system that failed her/him? Why must a patient accept the treatment (other than medical) that is currently being meted out?

Consider some facts – TB is a disease of the poor. Myth or fact? A bit of both. But it is accepted that it affects the poor disproportionately. And kills very often. Let’s look into the world of a TB patient and what s/he has to go through on the route to recovery.

First off – loss of identity – from the moment s/he is diagnosed, their identity is subsumed by a box. They become a number on a box, which is visited thrice a week when the medication has to be dispensed. I have sat for days in DOTS centres and observed that the healthcare professional relies on the number on the box rather than the patient who stands in the room.

Second – stigma and censure. Arrive at the DOTS centre and be censured for getting the disease; don’t turn up and get censured for being careless and being a threat to the community. Be treated at arm’s distance by the healthcare professionals, despite the training they have received on how to take care of themselves.

Third – side-effects and suffering. Complain at your own risk, because no one’s going to listen. You’re going to be told this is to be expected and it won’t help to make a fuss. Bear it; you’ll settle in a while. But DON’T give up treatment because then you’re going to become drug-resistant and become a threat to all around you.

Medically illiterate, baffled at what’s happening to them, fearful of the erudite healthcare professionals who are so much more equipped to know what the patient wants or needs, and a feeling of utter despondency and inadequacy – this is the portrait of a TB patient under treatment. In the face of all this, what options does a patient have, but to run away, or ‘drop-out’?

There is presently a lot of buzz around patient-centred care. The buzz is welcome as it might just bring about the vital shift from the healthcare-setting-centred model that is currently in use. We might just see the onus shifting from the patient to the healthcare setting and the definition of defaulter shifting. The patient might just manage to come into the centre.

It is a definite sign that people, be they in healthcare settings, the level of policy makers or the patients, want change. That’s why the narrative is changing and there can only be good news around the corner. There is hope at last and we just might be sitting at the threshold of something positive.